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Great Fourth of July

I realize the last entry was on the negative side. In fact, we had just had a great 4th of July together. We didn’t have any plans at all. I got up early, had breakfast, and took an hour’s walk. Then I had a cup of tea and took care of some email. After that Kate wanted some help with trimming some of the shrubs she had a hard time reaching. We worked together for about an hour. Then I took a swim. She finished a short time later, and she got in the pool as well. Following our short swim, we decided to have some leftovers for lunch. I mentioned that Bernie was playing, so we went to the 1:30 movie. When the movie was over, we came home, and I went to visit Dad. We enjoyed the pool and a glass of wine when I returned. This was the first time I felt like being retired would be a good thing.

Spending money

Although we live well, we have never lived beyond our means. The exception would be when I was starting my business. We borrowed money to undertake that adventure. We continue not to spend more than we make, but this year has been different. We are spending more, and my intent is to spend even more in the next year. The reason? I feel that we need to do as many things together as we can before time runs out. This coming week we are going to New York with our oldest grandson, Brian. We are doing it up right by staying at the Marriott Marquis, attending the Cirque du Soleil, Spiderman, and Blue Man Group. I have already booked a B&B in New York for a week in December for a special trip that I am considering the first part of our 50th anniversary celebration. On top of that I am going to book a trip to the Galapagos for February or March, 2013.

What is early stage of AD like?

This is a stage when the disease is mostly hidden from other people; however, to someone like me, it seems more obvious. The major problem is day-to-day functioning. For example, Kate has worked on a half-page letter of reference for a young mother who is a candidate for a PEO scholarship for more than a week. She has revised and revised it. I signed off on it several days ago, and discovered that she had never sent it and was revising it again. Two months in a row she has forgotten her monthly PEO meeting until someone called the night before. In fact, I just went into the bedroom to wake her up so that she would have plenty of time to get ready for PEO, and she had forgotten about the meeting. Of course, it is likely that she would have remembered it after getting up, but it would also be common for her to have forgotten completely. Two days ago she lost her purse with all her credit cards and ID, and we are scheduled to make a trip to NY on Tuesday. Right now I am assuming we will use her passport as ID. (Note added at 10:03 am. Kate found her purse at 9:30 this morning. It was beside her chair in our bedroom where she often works on her computer. She is quite relieved.) Her personal possessions are continuously being misplaced. She is less able to do the simplest things on the computer. All of these things frustrate her tremendously although we don’t talk about it. We just exchange knowing glances when things happen and I find myself often giving her a hug.

More than ever in our married lives, she feels she really needs me. When I come home from visiting Dad each evening around 6:00, she often looks miffed that I have been gone so long. Then she will often say, “I am glad you are home.” This is not said in any routine way. It is a genuine expression of her insecurity and need for my presence. She also feels she needs me to take care of things for her.

She gets along beautifully with friends. They really wouldn’t know unless she asks a question about something they have just talked about. Even that is something that doesn’t normally tip the off since all of us do that sort of thing occasionally.

She can’t follow instructions or any explanation of things nor is she able to give instructions. She will quickly stop me when I start to explain something. With others, she will simply “listen” and not process what they are saying. She frequently asks me to make calls for her, for example, to her doctor’s office to get a prescription refill or almost anything she can pass off to me.

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The State of Our Lives

Yesterday Andy Griffith died. His passing took both Kate and me back. His show was in its heyday when I was a student at UW in Madison. We always love him and the characters around him. The way I expressed it to Kate he was a “marker” in our lives, one of those people and events that were significant to us.

At the moment we are in a period where we have both settled into recognition of Kate’s condition and do not belabor it, but it isn’t that we don’t think about it. In fact, it still hangs over everything we do. Not a day goes by without multiple times thinking in some way of Kate’s diagnosis. For me, in particular, I find myself both remembering and forgetting (or acting as though I have forgotten). Let me clarify this last comment. Although I know she can’t remember things, I find myself asking her things that require greater memory than she has. For example, yesterday she couldn’t find a pair of shoes she wears when she is working in the yard. This morning I noticed that she was wearing them and said, “I see you found your shoes, where were they?” She answered, “I don’t remember.” I don’t believe that this comment alone creates a problem, but it occurs so often that I feel it is a constant reminder to both of us that she is losing her memory. It is amazing how many times we ask these kinds of questions in the course of a normal day. “How did you . . .” “What did you do . . .” “Why did you . . .”

On Tuesday of this week I received a call from an attorney that State Farm has provided for us in a lawsuit against us for an accident that I had coming back from Memphis in March 2009. I am to give my deposition on July 13, and the attorney said that the plaintiff’s attorney had requested that Kate be deposed as well. I said ok somewhat hesitantly. After hanging up, I had 2 concerns. First, is that Kate is uncomfortable being pressed to explain herself. For example, when I ask her how she solved a computer problem, she will usually say, “Don’t ask me” which I take to mean it is stressful for her to try to explain, and she probably is not able to do so. The result is that I try not to press her to explain anything. My earlier comments above acknowledge that I often fail at this. She is quick to tell me when I am pressing her, and then I stop quickly.

The second concern is that in her attempt to explain herself, she gets confused and gives inconsistent information. I was afraid that the plaintiff’s attorney would take advantage of this. That led to my talking with Kate about the attorney’s request. She suggested I tell the attorney about her Alzheimer’s and that we could provide a doctor’s statement if needed. I called the attorney back, and he accepted my suggestion although he did indicate that we may need the doctor’s statement.

One question one might ask is, “Is her condition getting noticeably worse?” The answer is it depends on the period of time with which you compare her present condition. I would say she is noticeably worse than she was a year and a half ago when we got the diagnosis. I can’t say that I notice a difference in the past 6 months. What I do see is her working harder to minimize her frustrations. For example, she had agreed to solicit our neighbors for contributions to the Alzheimer’s Association. She hasn’t done it and told me yesterday that she would need my help to get her started or she would never do it. I also interpret her growing interest in tending to her plants relates to the fact they don’t talk back, ask her questions, or provide other frustrations. She is simply able to do what she can. If she does less than she intended, there are no great negative consequences. The only critical thing is to keep everything watered.

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Back from Chautauqua

Yesterday afternoon we arrived back home from Chautauqua. We had a terrific stay at The Spencer and have already reserved the same room for next summer. Kate got along well and enjoyed herself immensely.

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Spending Money

I have always been very careful about spending money. Since Kate’s diagnosis, I have found myself changing somewhat. I now attach a higher priority on making the most of my time with her. Sometimes I wonder what I will wish I had done when I had the chance. For that reason, I have found myself spending more money on experiences this year than in the past. For example, I just arranged for a trip to NYC in Dec at a B&B that sounds appealing. New York has always been a special place for us. We especially enjoy it around Christmas. We have traveled there more than any other single place. I will look forward to this trip knowing that the number of trips we make there will be fewer in the years ahead.

The other day I did something I wish I had not done. We were in Niagara-on-the-Lake, Ontario, and I had not arranged for international calling. That means that calling back to the US is more expensive than it would be otherwise. Kate made a phone call to her friend, Janice. Afterward I reminded her about the expense of international calling. She felt horrible. I tried to tell her it wasn’t that important but I shouldn’t have said anything. Being careful with spending is still a part of me. That is especially silly since the call could not have been more than a few dollars. I’m still learning to adapt.

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Funny Things Happening in the Brain

Last night after we got back from taking Heather to the Nashville airport to catch her plane to Lubbock, we sat around and caught up on things we hadn’t been able to do during her visit. Kate asked me if I wanted an “Alzheimer’s Update.” I said that I did. She then told me that her brain had been doing funny things. She couldn’t recall much of the specifics but was able to tell me that it involved seeing places she had been in the distant past. One example she was able to recall was seeing herself going down the stairs into the family room at our first house in Knoxville. She said she was well aware that she wasn’t actually there or actually seeing it but that she would just have a flash of some past memory. We don’t know but tend to think this is in some way connected to Alzheimer’s. I suspect we may learn quite a few other things that we haven’t known before.

She also said she was adapting and thought she was getting along pretty well. She seemed to speak comfortably about it last night although we did not take much time, and I didn’t ask a lot of questions that usually annoy her because it is hard for her to answer. My dad has similar experiences.

I tend to think she is doing well except when she is under pressure to handle some task. The mother’s family album was one of those things. She is trying to finish up two PEO scholarship applications that are due this Friday. She has indicated any number of times that she is just about finished, but she continues working. I have worked with her a little and can see that she doesn’t follow instructions well. That seems to be particular important when you are completing an application online. She has been quite frustrated which bothers me. I want to help and have done a little, but she really wants to do it herself. I hope that she does not do this next year. This is simply too much.

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Our Granddaughter’s Visit

This past week our granddaughter from Tom has been with us from. It has been a great week with her. She has been an especially good companion for Kate. Throughout the week Kate has been impressed (as she has in the past) with Heather’s keen observance of things around her. She notices many things that we miss. I can’t help thinking, however, that this has been especially noticeable for Kate as her own memory declines. Two quick examples. Kate and I were looking for a picture I had taken of a Crowned Crane in Africa. It wasn’t long before Heather showed her the framed picture hanging on her wall in her office. Similarly, Kate had received a photo taken of Ken and her when they were young children. Kate commented that she already a copy of that picture but couldn’t recall what she had done with it. Not too much later, Heather showed her the picture that was displayed in our family room.

On a similar note, I was struck by a couple of things that Kate could not remember as she and Heather were preparing a special Father’s Day and birthday dinner for Dad and me. First, Kate asked me where we keep our placemats. Although we don’t eat at home much, we do get the placemats out often enough that I was surprised that she didn’t remember where they are kept. She also asked me where the spatulas are kept. A little less surprising is that she also asked where the blender was kept. This is less surprising in that I am the one most likely to use it. I use it regularly to blend soups for Dad.

We both thanked Heather for being with us and how helpful she had been. Heather commented on Kate’s forgetting things. I believe, however, that she doesn’t suspect the actual situation. She simply thinks of Kate as having a bad memory. This may be the story we see played out with the rest of the family.

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A Brief Overnight Trip to Nashville

Yesterday we went to Nashville to visit our friends, Ann and Jeff Davis. We had a nice lunch with them and then went back to their home for a visit. We had a good time, but as we left, Kate said she felt a little insecure with them. The Davises are both very smart. She felt it was difficult for her to join in on the conversation and felt a little left out. I was disappointed because Ann is someone Kate has always admired. At one time, the Davises had lived in Knoxville. I hope that our next visit with them is more successful.

Before meeting the Davises, we went to a mall in Franklin. As is our custom, we wanted to go our separate ways and set a time to meet at Belk’s. I waited for her about 15 minutes before calling her on her cell phone. It turned out that she was waiting at Sears. Today we went back to the mall and arranged to meet at same place. While I was waiting for her, she called to ask where to meet me. It can be difficult to coordinate with her.

 

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Sometimes You Just Can’’t Win.

It has been almost two years now since Dad has been at Mountain Valley, a rehab and skilled nursing facility. During that time I have tried numerous ways to make life easier or more pleasant for him. Often I have been successful. The best things have been his birthday parties and going out to eat. On the other hand, there are quite a few little things that have failed. Early on he found he was unable to see the TV; so I bought him a table-top radio with a cd player. I found he couldn’t see well enough to work the controls. In a short time he had knocked it off the table and broken it. After that I tried a small transistor radio that was a real gem. I got ear buds so that he could listen to anything without disturbing anybody. That failed quickly as well. He could never work the controls and then broke the antenna.

There is no need to attempt a recitation of the many other things I’ have tried, but this week I found another issue. Dad got a new upper plate in the past 30-45 days. He complained that they wouldn’t stay in properly while he was eating which made it difficult for him to eat. I bought him some Fixodent and have been using it each afternoon when I visit him. He had mentioned, however, that he didn’t know where it was kept; so he was unable to use it at other times when I was not there. I put it in his top drawer and, unfortunately, assumed that either a nurse or CNA would help him. Yesterday afternoon when I arrived, he reported that his teeth were hurting him, specifically the roof of his mouth. He wanted to take his teeth out, but I said we were going down to the dining hall and thought he should wait until after eating. When we got to the dining hall, he complained again and I took out his teeth. When I did, I discovered that there was an enormous amount of Fixodent in the roof of his mouth. It turns out that he had applied the Fixodent himself and got too much. After that he didn’t feel like eating; so he didn’t touch anything except the soup I had brought him.

About 15 minutes ago he called to say that the roof of his mouth was very sore and that he couldn’t even eat a banana that I had left with him yesterday.

The point of all this is to express the feeling that many times I (and I assume other caregivers) can’t win. In fact, Dad is like a bull in a china closet. He can break almost anything around him. He is regularly losing things and always blames the staff. I am sure the staff is sometimes to blame, especially in the loss of things like his teeth and cell phone. At least twice his cell phone has been taken to the laundry. The same with his upper plate. On the other hand, Dad in his condition is hard on things.

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Caught Between Father and Wife

This afternoon after we returned home from church and lunch, Kate encountered a frustrating situation that I suspect will either become more common or she will adapt to avoid such things. Either way life will change. Here’s the story.

She is working with a PEO sister in connection with a scholarship program. She has done this for a couple of years. This past year she found herself in an awkward situation when she failed to send in a candidate’s recommendation to the international PEO office. I don’t recall the exact details, but she ultimately sent the recommendation by FedEx but apparently gave the wrong address. She suffered no ill consequences except for some embarrassment for not having gotten the letter in at the time it should have been in.

A week ago the two of them met with about 10 new candidates for the upcoming year. Nominations must be in by June 15. They decided on two candidates their chapter would nominate and were looking for other chapters to nominate the others. They were scheduled to meet this afternoon at Bojangles to go over the details. Kate’s assignment was to simply type the basic information about each of six candidates. She had all the information on handwritten notes she had taken down at the time of the interviews.

I was in the kitchen while she was working in the family room. I could hear that she was frustrated. She finally asked if I could come and help her. As it turns out, I did very little but stay with her until she was finished. It took her a total of 3 hours to complete 3 pages of material. For the most part it was a straight copy from notes to the computer file. She is finding it very difficult to work with the new version of Microsoft Word and Windows 7. I can understand this as I am trying to do the same thing; however, she makes many mistakes that are in my opinion a direct result of her AD. She would delete information she shouldn’t delete. Her use of the program was so inefficient that she kept having to correct herself. That took more time than it should have.

She commented specifically on her inability to do the task. The real problem was that she doesn’t want to tell Shirley that she has a hard time doing this. That would be embarrassing and also might tip her off that she has AD. At one point, I tried to sympathize with her and said she would have to decline these types of things in the future. She said she knows that and was slightly annoyed at my suggestion. This is really hard. This is one of the things that others can’t quite imagine unless they have gone through it. Most people only think of the latter stages of the illness and believe that, as I have noted before, that the person with AD doesn’t know enough to experience frustration or sadness or any of the multitude of other emotions that go along with AD.

During the time I stayed with her as she was completing the task, she repeatedly said, ”Don’t leave me. You don’t know how much you are helping me.” For the most part, I was simply a source of security for her. I don’t mean to minimize the importance of this, but want to make clear that I did little in the way to actually organize the task or do it for her.

Since this occurred at the time of day when I would normally visit Dad, I did not get out to see him until she left to meet Shirley. I was a little anxious since Dad is sick right now, and I felt the need to check on him. It turned out not to be a problem. When I arrived, he was still asleep as he usually is. He had not eaten dinner. The nurse had checked his blood sugar. It had been 49 and 79 a little earlier. She had given him something to raise it. I told her to call me with any problems and that I was concerned about the low blood sugar.

It is now 6:35 pm, and Kate is not yet home. I expect her to be here any minute. We’ll take some time to be together and attempt to lower the stress level until the next time rolls around. This was the most serious situation since the problem with the letter of recommendation, but was similar to what was going on when she and her brother were working on a photo album on their mother’s family. I know Ken was probably wondering what was going on. One day he will know.

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Forgetting Is A Problem

On way to airport this morning Kate realized she had lost her iPhone. I placed a call to her phone but did not get an answer. Shortly, I got a call back from a restaurant where we had eaten the day before. They had found it and will ship to her.

While at the Residence Inn, Kate and gone out to get something for breakfast. She forgot our room number and had to ask the person at the front desk who called me in the room. She did not seem to be disturbed and said she handled it well.